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It is seven thirty in the morning, day two of an insomnia attack. I know the source. I had to trust my mother if I wanted to get the cat off of Ebay, and she made arrangements without consulting me for the spay/nueter. Then when I agreed to go forward with her plan because of course I was lied to by the shelter staff, something that in a few hours will be dealt with though I may put it off a day and try to sleep first as I may give up on dealing with them nicely… She of course does not show. I remind her. I try to sleep because I know she isn’t showing. I still, just in case don’t feed the cats or let them near water for seven hours while trying to sleep. They of course throw a fit. All night long.

It was actually quiet for the first five hours. I still couldn’t seem to rest. Of course, I am in pain, I am headachey why should my body rest? I actually didn’t let my Sunday caregiver come in because I was too tired to find out if she would do a half assed job and give me excuses that I have yet to verify but seem bogus to me. Ah well, it’s monday. Even if I don’t sleep I will call the office and broach the topics she felt I needed to know and since the local Community College is run by idiots, I don’t actually think she is lying.

I gave up on sleeping to write for this simple reason. I realized I felt the same way today as I did many years ago, ten in fact, when awaiting my mother. When I was in one of the many mental hospitals she would schedule a visit. I would get excited, and then… she wouldn’t show. She wouldn’t call. I would spend days worrying about her safety.

I have decided it is time for me to risk her shutting down and I need to tell her that she cannot expect me to respect her or trust her when she costs me money, I have no idea how the hell I am supposed to pay for Sylvani’s spay nueter now since I paid the shelter and this was supposed to be included. So I am going to send her a bill. I am going to itemize my stresses, and I am going to put a monetary value on said stresses. I will include a note that this doesn’t include every other time she has failed.

Even when I had no one left to ask for help moving in here she did this crap. Sometimes if it’s really important, life or death, she’ll show up the day she says she will. I already have stopped calling her most of the time, I already cut off Grandma and my elder sister. B is now Sixteen, she’s pld enough that if she needs me she can call me regardless of my mother’s whims and permissions.

I dislike that sensation that sits in my gut when I have to wait. I dislike the utter terror I get when being late. I also dislike the fact that as I lay in my bed waiting for her to show up I replay every time she berated me for making us all late, and not all of them were actually my fault. I replay each time she promised she would show up, and each time she failed to do so. Even though she saw my father do the same thing to me and my siblings and saw how much it hurt.

I am tempted to point out to her that when I need her to drive across the state, she won’t do it barring me probably dying and even then she puts me in danger. She’ll cost me money and will wonder why I never buy presents anymore, never call to just talk, and tend to just nod along to whatever she says without listening, though I really doubt she notices this. Yes. She’ll put me into a position where my health is in jeopardy and I am once again stressed and frustrated.

My brother and sister, who have both lived either across the state or the country however have not had this, at least that I was allowed to see. Instead, she’ll spend money that we don’t have on them. She’ll go across the country with almost no notice, and of course with me there’s always notice.

The best part of reminiscing a bunch of betrayal and abandonment issues is I realize now, whenever my mother refused to believe me after every hospitalization about trying to fit into my family, about trying to be happy, and always beleived my siblings when it came down to a matter of my pain, health, etc, and when she said “Well you never tried before, why would you try now?” She was really talking about herself.

The most hurtful thing she ever said to me was that, and when she agreed with my step grandmother that my disagreeing with their opinions meant I was full of hate. Whenever she promises me she’ll do better next time I know it’s that cycle of abuse talking. I have yet to tell her I think she’s abusive, but it’s damned well time. Screw her promises of my very own wheelchair van, it’s a lie to keep me around. Screw her in general. I am going to send her the bill after I get some sleep. I’ll find a way to take care of the cats, I always do.

I just hate that in order to stop her from hurting me I have to risk her hurting Beth. I hate that. I am enraged with this fact, and the idea that she seems to think it’s her right to treat her children like chattel, as if somehow time magically fails to pass for me.

Now that H my older sister is in the picture constantly does my mother try this crap with her? I somehow doubt it. After all I noticed a long time ago my mother only responds positively to the crueller behaviors. My mother only showed me actual symptoms of what she thinks love is when I was being abusive.

I know I write this sort of post about once a year, and I always mean it. Each year I get a little more distant. I am truly looking forward to having Section 8 and moving to California. She won’t be able to lie to me about visiting then, she won’t ever have the money to do so. I am safe once I am out of state. It isn’t as if she’ll actually call me or anything like that.

I considered adding this to the Humor section, my lack of sleep sure does make me mean.

I find it a bit odd to be writing this post. It isn’t odd that I would write about caregiver abuse, but that I would write about it again so soon on a personal level. I’ve been quiet about it because I didn’t want to spoil the surprise for my not so perfect now ex-caregiver K. Remember when I posted that the Honeymoon was over? I didn’t talk about the whole there, nor did I mention that K was going to be fired from that moment, as soon as I could find a replacement.

K was not as bad as the other abusive caregivers I have dealt with, but, she was worse in some ways. She was abusive to my neighbors, not just me. No one should be abused but I have always felt it should just be me, if anyone at all. Not heroically but I don’t want anyone else to hurt. I also was a bit unaware of some of the abuse, still in survival mode. It all hit me at once the other day, but a couple of days ago (That’d be a Monday) things exploded.

Before going into that I want to list all the ways K was abusive that I can think of, partly because I still feel this little niggling doubt, these caregivers can’t be all bad right? This is a symptom of abuse itself. It springs from that old addage, that if the problem keeps reoccuring it must be you. I realize that there may be truth there, but, with abuse it is not the fault of the victim, no matter who they are.

K’s Ways of Abuse:
Tardiness. The instant she was aware that I couldn’t just fire her, she became so unreliable I spent the next few months literally just waiting for her. This meant no appointments unless I wanted to risk punishment, this meant missing religious activities, personal activities, and put me back into that pocket of isolation that I had fought so hard to get out of. This meant also that I couldn’t schedule appointments with other caregivers to interview them.

Offering the Forbidden Foods. Forbidden foods do not just include allergens, which she filled my new kitchen with as she put her own food in my fridge and freezer. This includes offering me food that I specified triggered a PTSD response. Turkey and Quesadillas both to me are the worst food in the world. It’s a bit ironic on that last one but, it is no longer one of my favorite things. I told her clearly when I hired her that these foods were not welcome in my home. If I pissed her off, she would offer it to me, then mock me for being upset if I showed it.

Emotional Abuse. This is a bit of a borad umbrella, springing off of the specified torment above, she’d ask if that was Paul outside, she’d mention how hard it would be for me to escape in this apartment with there being a limited number of exits, she made sure to tell my mother I think she’s a bad mother, she did a dozen little things JUST to hurt me. This included losing things, hiding things, and accessibility challenges though that over laps into…

Physical Abuse. Being denied the ability to bathe, clean clothes, food, etc is physical abuse. So is spiking the heater up to 90 on a heat sensitive person, when they are asleep it is more dangerous. Putting piles of boxes infront of the refridgerator and then not showing up for a few days is also abuse. Making the home in accessible by arguing about where things go and then just putting it where you feel like is abuse. Throwing things, is abuse. Burning food to punish someone for not letting you make up hours you missed by being a lazy (censored) is abuse.

K I sure as hell hope you read this, because I never got to explain to you why what you did was wrong, and your mommy sure as hell never will. It’s also wrong for you to not buckle your child and enforce her seat belt time. If she dies you are liable for her death as Murder. It’s a cold hard fact, and one I hope you never face but, with the way your kid runs around a moving vehicle and distracts the driver, her danger increases. Oh and that warrant for your arrest? Who will take care of her if you never resolve that….

Snarly side note aside the abuse list is a lot longer but it’s hard. I feel like I lost momentum in my writing. So, since I can’t list every abuse let me tell you why she wasn’t given a nice ejection. The last day with K.

It started out on a somewhat cloudy day, I took the weekend to myself, because the endless waiting has left me a very angry client and Friday she was so late that after asking me to get up early so she could come in and have the afternoon off, I said screw it and locked up then went to sleep. I told her I was doing so. I worked it out with the people who are helping me change agencies, the original plan to ditch the pain in the butt, and they agreed with my choice so I gave K the weekend off. She always complains about how hard the work is, how we never have fun etc, so it seemed like a good idea. Side note here, you can’t have fun if you are late and MISS the fun.

So, Monday comes, I slept a bit late, took my time getting ready, I didn’t know if she would show or not. I unlocked the door, go to the bathroom, and the banging starts. An Unlocked Door is impossible to open you see. So I finish my business and go to open the door. She is HOLDING the knob so I can’t help her. I have to work hard to not show my disgust at this and I go and sit down. First things first I give her a chore, the litterbox. Not to punish her but because after five days it is rank. Five Days. She didn’t do it when she was told to the last time.

Then, I decide to ask for food. This is where it all starts to go wrong, apparently my wanting her to do her job is a bad thing. I bought pizza recently, and decided to eat it. So I ask her to put pepperonis on the pizza and use the oven. She supposedly cleaned this oven but I always put my pizza on a sheet and insisted. Now I am glad I insisted on that because with in minutes the oven, which she supposedly cleaned, was on fire. She set my kitchen on fire.

Instead of turning off the oven, opening windows etc, she runs outside for five minutes. I am stuck in smoke. So I start trying to get the window open, because I cannot go outside without my chair. She comes in and yells at me to sit down, so I do. I am not going to waste energy arguing. She then proceeds to leave the door open, to which I ask her to close it and lock the cats up THEN open it. I don’t know why this is a bad thing, I want to protect my cats. They take care of me. She replies with, and I quote because it pissed me off, “You don’t care about my feelings!” Her feelings? I didn’t think before I spoke, “Not right now, no. Now close the cats up.” I am choking on smoke, she keeps going outside to escape it, and then says that crap? Really? She follows this up with a, “After all I’ve done for you.” I let go. I have kept my anger on a short leash, and this is the first time I have yelled. She;’s already screaming at me, and I am not going to have this dumb (censored) in my (censored) house. I cursed too. “Get the (censored the F word) out! You are FIRED!” Somehow, I managed to double yell Fired.

She kind of stood there for a minute, so I got up. I am half expecting her to hurt me, because with everything else? Why wouldn’t she? So she storms out after I grab my grabber, which is metal and solid. Yes, I armed myself just to feel safe. Also I was wobbling badly so I used it to balance and moved forward. She moved back and then threw my keys at me. Then Her keys. Then she stormed out the gate and I locked up. My neighbors and caseworker showed. Kat my caseworker, I haven’t told you about her yet but she’s fantastic even if we get the name giggles, was already there with another client and came immediately. My neighbors all checked in on me and have been regularly when Keera doesn’t show. Since she abused them too, I don’t blame them for staying away when she is here.

I have been alone for two days, and I have been great. I get quiet time, instead of incessant texts that show her illiteracy, not just text speak but gibberish to those who KNOW text speak, chain letters etc. Now, she did steal from me, and that last day took some of my morphine. She also happens to owe me money. Will I ever get paid back? I will sue her if I have to, because she signed an IOU for the money. I decided it was worth it. I even put in an addendum that states that if she doesn’t pay by a certain amount of time, then there is interest added on. She signed it and we each have a copy.

I win. I am good right now, and I also know that I really do win. How can I not when I am strong enough to make my way out. I can’t share everything with this space because I mean it when I say there is going to be legal action. I can handle it. She probably can’t. I (censored) Win.!

Once upon a time, in a land not so far from here, when my legs worked without pain and I could dance I did not need any help in the world. I was blissfully unaware of how much harder things could be. Now, when I am hungry I have to debate if I should risk trying to microwave that bag of popped corn, or if I should hit the buzzer (obtained via Freecycle) and ask Ye Olde Caregiver to feed me. Usually it is the latter. The apartment is not accessible and that means hauling myself out of bed and to the kitchen. By the time popped corn is ready, I am out cold.

Yesterday he wasn’t here and being that I have yet to really buy groceries in the new apartment, I had to fend for myself. It has been six months since that was the case, and at first I was stumped. I couldn’t cook, standing and cooking is too dangerous and the chairs make me burn my arms up, which leads down the road of scars and infection. In my fridge there were a total of three options. Beans, a rare blend with cheese and some secret but gluten free sauce courtesy of Del Taco, eggs, and a lot of drinks. So I piled the beans on a paper plate, put it in the microwave and had myself a feast.

That got me thinking, and first I asked permission before writing about him on the blog, that my caregiver takes a lot of crap, just by default. When we go out he fends for me, when I cannot reach something or if I am so low on energy that I do not see the predators coming. he is a shoulder to cry on when my pain meds fail to make it all better. He fights for me, he cooks for me, he moves me around the world, and he even helps me get in and out of the shower.

Without him, I would likely be trapped in an abusive environment. Someday I will list all of the abuses I have dealt with, but, this is a joy. Yes he is a paid caregiver, yet he works four times as much as he gets paid for. Not only does the state refuse to offer overtime, but, I cannot seem to get an extension on his hours. He deserves to get paid, as he does duties not listed by most. He even cleans out the dreaded litterbox.

Some people might wonder why a woman with such a dark past would want a male caregiver. I initially was resistant but he is the right man for the job. Not only can I trust him but my personality detecting cats both adore him as well. I have never felt endangered by him, and that is not true of anyone else in my life. If you have a caregiver or a service animal, how much do they do for you that goes unseen?

Sometimes when I am napping and kick the covers off, he tucks me back in without waking me. He feeds my cats, he even helps them get dressed when my hands are too swollen to work the velcro. He finds my missing pills when the faeries hide them (or I lose them). He does anything I ask of him, including running around town picking up furniture via freecycle. Today he has picked up a couch, a bookshelf, and a desk. I now have actual furniture, which he will dust. Yesterday he moved a TV into my room, cleaned up cat barf, and did laundry. Plus his daily chores which include three meals a day, two meals for the cats, and anything else I can dream up.

He even invents things for me. He is a technological wiz, and he enjoys making things. His hobbies include making games, that’s right, video games and woodworking. I have yet to run into anything he cannot fix or improve. He is one of the dearest people I know.

So thank you to all caregivers. Without you the world would be a dreadful place full of hunger, pain, and without the light you bring. May you never be taken for granted.

I have felt the urge to blog repeatedly, but until now I have not given in. Blogging can be as personal as writing. I have spent the last week in preparation mode skimming the internet reading other blogs, seeing what I liked, what I didn’t like, and the power behind the words. Some of these bloggers brought me to tears, and that is no small feat. Others made me laugh, some caused me to feel sorrow, and a few gave me the chance to feel angry.

I wasn’t sure how to start my first post, but, since I am an advocate for all disabled, all women, all men, all people in need I will start there. The topic nearest and dearest to my heart is Service Animal Law. Some of you who read this might think you know about service animals, and you might be right. Others will presume that a service animal is only for a blind person. You are not correct. A service animal, by the federal definition, is any animal trained to assist a disabled person with a task. This does mean that if you have a seizure alert dog, it has to do more than that. The law even gives behavioral guidelines.

I have a service cat. She is trained to do things including retrieval, seeking assistance from specific humans in the case of an emergency, medication reminders, object retrieval, and she has also been trained to help me balance. A lot of these tactics came out of her instinctual responses, but those needed to be honed. She also had to be trained to handle a crowded mall. Now she handles it better than I do. People often ask me why a cat, and my response is simple. I am not allergic to cats, most of the time but I am allergic to dogs. I also trust cats, and I haven’t trusted many dogs in my life. I have to trust my service animal partner.

I have faced some serious discrimination because of being disabled. When I was still walking most of the time, it was harder because I was in extra agony since forcing myself to walk through a store took all of my energy. The more tired I am, the more pain I feel. There have been times when I have had shopping carts jerked out of my hands, causing me to either fall or nearly fall. I have been denied the right to buy groceries, and recently I have been illegally denied medical care.

I am perusing legal action but I am well aware that other people might not know how. Today, one of the blogs I read, reminded me that not every person is trained in how to handle discrimination. When you are disabled, you might feel more vulnerable to attack, and when people threaten to take away your service animal or refuse access, it can be terrifying. I feel often as if I am going to be hit if I push forward. I was an abuse victim for most of my life, but, adulthood came and I found a way to break free. Not everyone is that lucky.

So, here it is, my guide for other disabled people with any LEGAL service animal on how to advocate their rights. A side not before I begin, if you do not need a service animal, do not lie. We will catch you eventually, and the crime has a punishment. Depriving people of their rights through your shallow behavior is the worst thing you could possibly do, and, whether you believe in Karma, Hell, or just recriminations in this life from other people, you will pay for it. The law will get you, Advocates will get you, and if Karma gets you, it will be worse than anything I could dream up.

The Guide– Dedicated to Renne, Helen, Aimi and Snow, but especially Bree. (All Links will open in a new window/tab.)

Step 1. Stay Calm. This is for me the hardest part of advocating for your rights. Sometimes I want to run, other times I want to scream and cuss. Neither tactic is helpful. As hard as it is, you have to be the bigger person, and stay nice. You can have anger in your voice, do not deny the emotion but do not let the emotions over ride your goal.

Step 2. Calmly as you can, state that they are breaking the Federal Law. This is what I have practiced saying in the Mirror daily for the last two years. “You are violating the Federal Law. The Americans With Disabilities act provides protection for my use of my service animal.” When I say this I hand them a copy of the law. You can get a copy of the service animal laws from the ADA. I have the business brief printed with my state law on the reverse side. You can obtain access to your local service animal laws at http://www.animallaw.info/ I carry my print out in aUSB case on my scooter keys. You can also buy laminated cards from various businesses with the law on it that explain your rights. For some people this is easier. Those cards are usually kept on your animal’s harness.

Step 3. Explain the law in simple terms and how they are violating it. This does mean you need to know the law. Not only does knowing the law protect you from discrimination, but, it lets you educate people. The biggest cause of discrimination in my experience is a lack of knowledge. If someone isn’t willing to learn, or admits they know, then you have a larger problem. One of the main causes of confusion with service animal awareness is that few businesses train their employees. It is illegal to require a service animal to wear a vest or show an ID tag. When someone asks me for this for my cat, I show them the law and educate them. Often, they will try and state she cannot enter because she is not a dog. My local laws state only dogs can be service animals. The laws are written so that the stronger law prevails. This means that if the Federal law says I can have any animal, that is trainable and meets the standards and the local law does not, we refer to the federal law. However if you live in a state like California that requires ID tags for all service animals, then, the law requires you have an ID tag. This is another source of confusion, but, it is an attempt at increasing the rights of many.

Usually by this point I am either in the building or they are just going to break the law anyway. If you have reached this point, it is time for Step 4.

Step 4. Take a very deep breath, and remember Step 1. Then ask to speak to their supervisor. If they refuse or are the supervisor you can try explaining the laws again, or calling another advocate to try and help. I keep the number handy to the local advocacy organization, and they have helped me countless times. Even knowing I can call day or night, is helpful because I do not feel alone. At this time I have no national links, but if you are in New Mexico, contact Service Animals and the Law. (Link forthcoming). If you have links nationally to websites that can help, post them in a comment. I want this page to be a resource for any person in need.

At this point you should be through the trying time, most managerial staff listen well and correct their employees. Recently I had to fight my way into an apartment complex using this tactic for three months. Even when I had food poisoning I had to try and follow my rules, but, eventually I prevailed. Advocating for yourself is the hardest part of having a service animal.

Not every person responds to this and if you still cannot get through to them, you need to contact the ADA. You can email them a detailed complaint, include names, addresses, contact information for both parties, and send it to ada.complaint@usdoj.gov . If you would rather call you can contact the ADA via their hotline using these numbers: 800-514-0301 (TTY-800-0363).

Remember, you are strong, you are beautiful inside and out, and you are not alone.